Helpful Safety Tools and Resources for Youth with Disabilities and Special Health Care Needs

Estimated read time: 1:20

Summary

In the latest episode of the 'Lunch and Learn' series by Family Partners of Morris and Sussex Counties, Holly Denneny introduces Adrienne Robertiello, a special healthcare educator at Children's Specialized Hospital. Adrienne discusses crucial safety tools and resources tailored for youth with disabilities and special health care needs. The video emphasizes the importance of planning, communication, and utilizing resources like emergency contacts and safety plans to ensure well-being. The session is packed with advice on household, fire, emergency, travel, and community safety, significantly reinforcing the need for proactive safety education and planning.

Highlights

Holly introduces Adrienne Robertiello, healthcare educator at Children's Specialized Hospital, who'll present on safety tools for youth with special needs. 🌟
During COVID, the 'Lunch and Learn' series successfully connects families with expert resources for children with disabilities. 🌐
Adrienne acknowledges Kohl’s Cares for funding crucial educational initiatives. 🧸
Safety planning includes keeping harmful items out of reach and teaching children about hazards with visual aids. 🏡
Emergency response education highlights the need for effective communication with first responders. 🚒
Teaching children to call 911 responsibly and ensuring their understanding of emergencies is emphasized. 📞
Travel safety involves preparation, such as pre-arranging support at airports with TSA. ✈️
Emergency preparedness involves creating detailed safety plans and registering them for disasters. ⚠️

Key Takeaways

Planning ahead and empowering youth is crucial for the safety of children with disabilities. 🛡️
Coordination with emergency responders and community members enhances safety. 🚑
Practical resources and visual aids are effective tools for educating youth on safety. 📚
Community engagement is vital in ensuring accessibility and responsiveness in emergencies. 🏘️
Travel requires special preparation, including collaboration with airline support for smooth journeys. 🌍

Overview

In this dynamic 'Lunch and Learn' session, Holly Denneny kicks off a conversation with Adrienne Robertiello from Children's Specialized Hospital, focusing on safety tools for youth with special health care needs. Adrienne, whose work is supported by Kohl’s Cares funding, sheds light on the myriad of challenges and safety concerns that families face daily. From household hazards to emergency interventions, the session is a treasure trove of practical advice tailored to individual needs.

Adrienne emphasizes establishing strong safety plans tailored to the unique needs of each child, ensuring everything from household to travel safety is covered. Her recommendations range from practical solutions like securing household items to coordinating with local emergency responders. Moreover, the importance of planning for emergencies, understanding community resources, and ensuring plans are adaptable and practiced are strongly highlighted, making it clear that everyone has a role to play.

With a focus on empowerment and community collaboration, this session strongly encourages participants to proactively engage their local community and emergency services. Adrienne advises on using available resources, establishing comprehensive safety strategies, and fostering open communication with law enforcement, thus ensuring safety and security for children with special needs. It's a session rich with advice, aimed at building resilient and well-connected families.

Chapters

00:00 - 00:30: Introduction and Purpose The chapter 'Introduction and Purpose' opens with a warm welcome from Holly Denneny, a representative of Family Partners of Morris and Sussex Counties, New Jersey. She introduces the 'Lunch and Learn' weekly educational event, explaining its purpose as a means to introduce experts in the field of caring for youth with special needs and challenges. Holly notes the success of the program, particularly during the COVID-19 pandemic.
00:30 - 02:00: Recording and Presentation Details This chapter provides a brief overview of the recording and presentation details for a session featuring experts from different fields and organizations. The speaker emphasizes the availability of vital resources and information. The session will be recorded and made available to participants via a link, and will also be posted on the organization's YouTube channel for broader access.
02:00 - 03:00: Guest Speaker Introduction The chapter introduces guest speaker Adrian Robertiello, a special healthcare educator with Children's Specialized Hospital. The host emphasizes the speaker's action-packed presentation and encourages the audience to ask questions via chat, assuring that they will be addressed. Despite the abundance of material being covered, attendees are reassured that slides and an extensive resource list with embedded links will be distributed afterwards for further assistance in accessing the materials discussed.
03:00 - 04:00: Presentation Overview In the 'Presentation Overview' chapter, the speaker introduces Adrian, a returning guest who has previously shared valuable insights with the 'Mom Squad' on managing family dynamics when there is a special needs child involved. The speaker expresses admiration for Adrian's energetic and passionate approach, emphasizing that Adrian combines personal experience as a parent of a special needs individual with professional expertise to make a positive impact.
04:00 - 05:00: Kohl's Cares Donation The chapter titled 'Kohl's Cares Donation' involves a presentation by Adrian, who is focusing on quickly covering several important topics related to caring for challenged youth. Adrian expresses his willingness to address any questions or elaborate on details at the end of his talk. The session emphasizes providing help for those who care for challenged youth, indicating a charitable or support-oriented agenda.
05:00 - 07:00: Inclusive Healthy Communities Grant The chapter begins with the speaker acknowledging the support received from Cole's Care, a charity initiative that funds various programs, including the speaker's work at Children's Specialized. The donation from sales of stuffed animals and books at Cole's stores is highlighted as a significant source of funding for projects across the country, and the speaker expresses gratitude towards Cole's Care for their contributions.
07:00 - 10:00: Home Safety The chapter discusses the often overlooked importance of planning for home safety, particularly for people with disabilities. Unlike the vast resources and training available for typical children and adults, there is a noticeable gap in safety planning resources for those with disabilities. The speaker emphasizes the need for inclusion and attention in safety preparations for everyone, highlighting that home safety should be an important conversation universally.
10:00 - 12:00: Safety Challenges and Poison Help The chapter titled 'Safety Challenges and Poison Help' discusses an ongoing grant related to inclusive healthy communities. This grant is from the New Jersey Division of Disability Services under the Department of Human Services. The focus of the grant is on individuals with disabilities and special health needs, addressing various areas pertinent to these communities. The speaker expresses a willingness to share more about the grant and the work being done.
12:00 - 15:00: Safety Locks and Child Proofing The chapter discusses safety locks and child proofing, focusing on home safety for children from birth to kindergarten. It mentions the common hazards present in homes that could lead to children falling or encountering other dangers. The importance of using safety measures such as safety locks and other child-proofing techniques is emphasized to prevent household accidents.
15:00 - 21:00: Fire Safety The chapter focuses on fire safety, particularly for children and individuals with disabilities and special health needs. It emphasizes the involvement in safety from a young age, highlighting the ineffectiveness of traditional safety measures, like cabinet locks, as children grow older. The discussion presents the challenges faced by older children, adolescents, and adults with disabilities in maintaining safety with common household items and emphasizes the need for adapted safety measures.
21:00 - 26:00: Emergency Response and First Responders The chapter discusses challenges and safety concerns related to emergency responses involving children and adolescents. It highlights behaviors such as breaking things or being unaware of danger, like mistaking detergent pods for candy. These scenarios can pose significant safety risks during emergencies.
26:00 - 29:00: 9-1-1 Awareness The chapter '9-1-1 Awareness' begins by highlighting several safety challenges that need attention and preparation. It specifically focuses on the issue of pica, where individuals ingest non-edible items such as detergent pods, cat litter, coins, or small toys. This behavior could be due to sensory preferences or behavioral challenges. The chapter emphasizes the importance of recognizing these risks to ensure safety.
29:00 - 37:00: Transportation Safety The chapter discusses transportation safety, emphasizing the importance of having emergency numbers handy, such as the MJ PIUS in New Jersey. This organization can be contacted for guidance if a child ingests something potentially dangerous, and they assist in deciding whether calling 911 is necessary.
37:00 - 41:00: Community Safety The chapter titled 'Community Safety' addresses essential safety measures and resources available for emergencies and potential hazards, especially in the home. It highlights the importance of calling 911 for life-threatening emergencies and offers information about the poison help hotline, which is available 24/7 for cases of suspected poisoning. Additionally, the chapter touches on safety precautions such as installing safety locks, latches, and brackets to safeguard homes and protect family members, particularly children, from dangerous items or situations.
41:00 - 47:00: Elopement and Wandering This chapter discusses the challenges associated with elopement and wandering, particularly in relation to age, strength, and motor skills development. It emphasizes the importance of keeping potentially dangerous items out of reach and removing access until an individual comprehends the safety aspects and masters the necessary skills. The goal is to maintain safety while progressively allowing more freedom as capabilities improve.
47:00 - 55:00: Emergency Preparedness The chapter 'Emergency Preparedness' emphasizes the importance of promoting independence while prioritizing safety. It discusses the necessity of understanding safety risks and ensuring protection. Additionally, the chapter refers to a resource list with corresponding letters (e.g., ABC) that align with the slides presented, facilitating easy reference and correlation.
55:00 - 60:00: Police Interactions The chapter discusses available resources and tools designed to improve police interactions. It introduces printable visual symbols meant to prevent access to restricted areas or items. Additionally, the organization 'Advancing Opportunities' from New Jersey is briefly mentioned for its relevant contributions, although not detailed within this transcript.
60:00 - 73:00: School Safety This chapter discusses assessing safety in the household, including evaluating access to potentially dangerous items like refrigerators and poisons, as well as issues like wandering or elopement. It highlights the availability of a qualified provider within the children's system of care, specifically for those connected to the dg perform care system, to assist with these assessments.
73:00 - 77:30: Safety Education Tips The chapter titled 'Safety Education Tips' provides insights into various aspects of safety education. Initially, it mentions a helpful and friendly organization that offers information on home safety. Then, the focus shifts to fire safety, discussing the challenges faced by children, adolescents, and adults across the lifespan. It highlights that some individuals may not understand the dangers associated with fire, such as lighting something or recognizing the risks posed by barbecues and fire pits.
77:30 - 85:30: Conclusion and Closing Remarks The chapter titled 'Conclusion and Closing Remarks' discusses the challenges faced by individuals, particularly those with autism, anxiety, or other intellectual developmental disabilities, in emergency situations such as fires. It highlights the difficulties these individuals may encounter in communicating effectively or sensing danger like burns, due to their sensory issues. Furthermore, the chapter points out the unpredictability of their reactions in such situations.

Helpful Safety Tools and Resources for Youth with Disabilities and Special Health Care Needs Transcription

00:00 - 00:30 hello my name is holly denneny and i'm with family partners of morrison sussex county in new jersey and it is my pleasure to welcome you to our weekly educational event we call lunch and learn and the purpose of lunch and learn is to help us introduce to you experts in the field of caring for uh youth with special needs and challenges and our weekly program has been very successful through covid
00:30 - 01:00 helping us bring to you experts in different fields from different organizations who come to talk to us about things that we really need to know about and resources that we need to uh be aware that are available to us so um i am going to uh tell you that we are recording today's session which will be available following the presentation we will send it to you if you're on this call we will also post it um on our link i'm sorry on our youtube channel and i am telling you right now that our
01:00 - 01:30 guest today adrian robertiello is a special healthcare educator with children's specialized hospital and she has an action-packed presentation lined up for us so if you have questions throughout the presentation drop them in the chat and we'll be sure that we get to them but there's a lot of material that we we are um that she'll be sharing with us but fear not we are sharing the slides afterwards and also a very extensive um resource list that has embedded links that will help you find all these materials so
01:30 - 02:00 i could say so many wonderful things about adrian she's been with us before she spoke to our mom squad about how we improve and and help healthy dynamics with siblings when there's a special needs youth in the mix so if you haven't already seen that check it out it's on our youtube channel and um adrian i could talk about you forever because i love the energy and the passion that you put in you are a parent of a special needs individual and i love that you are not only in it for uh your heart but your smarts you are putting your skills to um a really good
02:00 - 02:30 use to help those of us who care for um challenged youth so adrian i'm turning it over to you take it away thank you holly and hi everyone um so i i am going to say i will be speaking very quickly i'm going to go through a lot of these topics because there is so much to cover but if there's anything any question you have or if any is there if there's anything that you would like me to expand upon um i would love to do that at the end so that's why i'm gonna go through this pretty quickly let's get
02:30 - 03:00 going um let's start there we go um i do have to put in a plug on the work that i do um all through the pretty much most of the time that i've been at children's specialized is um funded by a generous donation by cole's care so those stuffed animals and those books that you see in those stores those are the things that really are funding a lot of the work that i do and other people do throughout this country so i say kudos to cole's cares and and great job calls okay so safety is
03:00 - 03:30 important and sometimes not often part of our conversation is important for everyone and everywhere so this is very often when we hear about planning for safety we are here about planning for um typical children or adults and we see all these resources all over the uh internet and we get there's training all over the place but it's not often um for people with disabilities so i want to just briefly share that we're
03:30 - 04:00 working on a grant right now that we have received that we have through it's called the inclusive healthy communities grant from the new jersey division of disability services new jersey department of human services and you can see right there are some of the categories that we're working on and it's totally focused on individuals with disabilities and special health needs so we are focused on that in so many areas um if anybody would like to know more about this brand and the work we're doing i would be happy to share that i'm
04:00 - 04:30 after this presentation you can give me a call send me an email would love to share more so now let's talk about safety so let's start with home safety so we look at some of these things that are in our homes so it could be people you know our children they maybe they may fall there are household hazards and you can look at some of these pictures that you use when we think about typical kids where we're taking you know from birth to let's just say kindergarten and
04:30 - 05:00 in first grade we we are involved very much in their safety and even for kids with special needs we can be involved in their safety but then these kids get older and those things that we buy in the stores those little locks that we put on the cabinets kind of doesn't work the same way that they would for a young toddler right and we have lots of these things that you see here on the screen that could be challenges challenging for many of our kids and even adolescents and adults with disabilities and special health needs
05:00 - 05:30 some of them are maybe you know throwing or breaking things climbing on things they may not know how things work they may not know cold from hot or even be able to feel cold from unhot we can see that little those little detergent pods here which you know they they're now coming in really great protective packaging but we're now talking about potentially older kids adolescents who this kind of looks like candy and and these things are really potentially very dangerous when
05:30 - 06:00 ingested so let's look at those safety challenges and make sure we pay attention and and are preparing for them as i mentioned just a moment ago with those um pods those detergent pods it could be anything pika is when we ingest something that's not meant to be edible so that could be as you see here cat litter a coin small toys it could be for sensory purposes where they like that feeling or it could be a behavioral challenge that they're having but these are things that we need to look at and
06:00 - 06:30 potentially if they're something that could be dangerous so in new jersey here we have something we call mj pius and that's that number i recommend everybody keep that number available great organization it's not 9-1-1 so if your child ate the dirt or the cat food or something else you give them a call and they walk through that with you and help you through what to do next if 911 needs to be called they will absolutely assist you with that if you think it is a
06:30 - 07:00 life-threatening emergency don't call this number call 911 immediately but this is 24 hours a day seven days a week you can call the poison help number and they are a great great way to um for anybody who's eating something or has ingested something that they think might be problematic so we talked about you know when kids get older here and we talk about some safety locks and latches brackets things that we put on in our homes and around our homes to protect against dangerous things but
07:00 - 07:30 again it's often based on age there's different challenges and strength and motor skills that are in process so the the the tip here is to keep things at a site out of reach as much as possible and to remove access until that person understands the safety aspect and has mastered that skill and we always should you know protect things as as long as much as we can but we also want to um get to a point if the person is able and
07:30 - 08:00 understanding that we want to empower independence and use of things right but we want to make sure safety is first and we're protecting and making sure they understand safety risks um some of the things um you'll see this these little letters on the top of the slides those refer to the letters that are on that resource list that you'll be getting after the presentation so abc they'll go along right with these pages on the slide so you'll be able to correlate
08:00 - 08:30 the information with those resources so this is something we made you can feel free to print them cut them out make your own color them your own and you can put these throughout your house on things that are out of limits um and so these are just some visual symbols that can be used on things that that we would not want a person to access um there is an organization bar in new jersey called advancing opportunities um they have a they do a lot of things um but we're going to talk right now really
08:30 - 09:00 quickly about safety they can do assessments in your in the household looking at you know can you know accessing refrigerators falling poisons all these things elopement wandering they can help you do that assessment and i gave that information there at the bottom of the page they are a qualified provider to the children's system of care so that means if you are part of the system that dg perform care system then this can be for you so um
09:00 - 09:30 i just gave some information here um and they are very very helpful and friendly organization okay so that's home safety now let's talk about fire safety so some of our kids um adolescents and adults i'm going to go there for the throughout the life span they may have various fire safety challenges so they may not understand any type of fire danger lighting something or if something was burning what that means the barbecues or fire pits all of those
09:30 - 10:00 things they may not understand they may not know how to communicate if they do get burned even they may not be able to feel it depending on that child's sensory um issues for that child um they may um it may be difficult to predict the person's reaction so we're talking a person maybe with autism or anxiety or other um intellectual developmental disabilities may act unpredictable in a fire it's a very
10:00 - 10:30 you know this is a crisis that's going on and we all may act differently in these kinds of situations so i'm just going to say sometimes people i'm going to use autism for this example they may have a place that they feel safe in your home right they may it may be under it in a closet under a bed in the bed in the basement it could be some place that they feel safe and secure and they go but that person that place may be at risk during that fire so i'll talk about that in just a minute but we really need to
10:30 - 11:00 um make sure we know where that safe place is for our child because again if there's a fire we need to know and help them there and they also may not understand or be able to generalize instructions or drills so a fire drill that you do in your house and you're at grandma's they may not be able to transfer it in that location or if you learn it in school they may not be able to transfer it home so we want to teach these things in multiple places with multiple people really important to help generalize those instructions and the drills
11:00 - 11:30 so that safe place as you can see could be anywhere we should um identify where that is um when we talk about fire safety and we tell we if we have fire drills hopefully you do and and we're developing as i said as part of the grant some really great resources where we need to develop safety plans right and involve our children as best they can with those safety plans um i wouldn't call this my safe place we
11:30 - 12:00 really need to reword that and that could be the place they like to go but we need to have that safe place that safety zone out of the house at a place that everybody knows where it's going to be so they know that if there is a fire they can go to that place not necessarily to this place here that they feel comfortable um sesame street for our young kids um put together this really cute great family guide giving about making a map ways to get out getting out and staying out um waste so
12:00 - 12:30 i'm not going to go through this detail but it's really i'm a great the the link is there on the bottom and the little d there is you can click on it and be able to go right to that this resource here this is more things that they have on that website and um i know this because my son has watched this a thousand times i'm sure but it's um elmo visits the firehouse if you could find this online i'm sure it's old i'm not sure if you can still get it i don't even know if they still have cds or dvds
12:30 - 13:00 or whatever they are but um i could recite some of the songs it's like just get out don't you go back in and um really great stuff here so if you have the opportunity for a young child particularly if they love elmo really great video on elmo visits the fireplace house and really puts this in perspective and also gives the perspective of elmo who experienced by a fire at hooper's store and really how it made him feel and how he they helped him get over that really great video i recommend it
13:00 - 13:30 all right so now let's talk about a little bit about emergency response and interactions with first responders so i'm going to flip the side from the child and and you to over to the emergency responders and some of the challenges that they might have so their your child may have communication difficulties they may not listen understand what the instructions are they may not respond to a verbal command so these are some of the challenges for the emergency responders that person may not comply with the instructions or may resist them when they try to help them
13:30 - 14:00 in the escape so that's the struggle there's a risk of eloping um so yes they may rescue them out of the home but then they may either elope and do something they may just go running and so then we have another issue besides the fire or they may go back into the home or another home per se so those are these are some of the things the safe place we talked about and i'm going to emphasize the bottom one for a second so many families who have kids who are adolescents who are
14:00 - 14:30 have a tendency to elope and wander will do some really creative things on their windows and doors to kind of prevent that person from leaving the home right and so these are bars and windows on the windows or wood or these really create i heard if someone had a barn door of some sort installed they could be special bolt locks on the door but if if the emergency responders do not know about this this may prevent your child from coming out but it will also prevent and
14:30 - 15:00 um restrict that rescue from happening in an efficient and quick way and time is of the essence so it's very important whatever you do in your home to have that communication with your local first responders so that they are aware really very critical um so ways you could have these connections with emergency responders you see a lot of it here um sometimes it's at school sometimes i mean invite them over for um you know i know it's weird with covid right now so you could do something virtual but there's also you know have a barbecue and say hey you
15:00 - 15:30 want to come over and meet my you know philip you know you come over you can see a lot of these kinds of interactions national night out just happened that's a great way to do it so um any opportunity you have to connect with any of your local emergency responders please fire rescue please do please definitely do um this is a sheet that we've created again um it's a resource that you can fill out it's not an official form in any way but you can use this and share this with your local responders for a
15:30 - 16:00 very long time i printed this and i kept it two places i had it i'm not sure if it meant anything but i had it on my refrigerator um and i also had it clipped to the back seat of my um the car my so my car seat it was clipped to the back and so if i ever became incapacitated somebody's going to have a little bit of information this also could serve as a conversation when you talk to your emergency responders so they can know a little bit more about your child
16:00 - 16:30 um so i remember i said you should tell about you know those things in your home but you could also tell you know does your child have the tendency to wander do they will they not respond to a verbal command all of these things that you feel might be challenging and i'm not only talking about your child this could be your elderly parent who may have certain needs whatever it might be call your contact your local dispatch center do not call 9-1-1 they'll call the every account is different wherever they dispatch 9-1-1 contact them and
16:30 - 17:00 talk to them you could be virtually it could be in person and share information about your child that's critical to rescue that could be police fire or rescue really important to have that conversation so we have a resource that we developed here to help guide you through that conversation and some of the things that you might want to disclose to them so this is really your cheat sheet for having that document that conversation with your emergency responders i don't i don't want to interrupt your flow here adrian but i just want to
17:00 - 17:30 remind folks that this is uh will be available afterwards i mean i went through some of these materials and they're very specific and very helpful so the little the little letter in the corner means that's how you find it at the end right absolutely okay so 9-1-1 so some people with various disabilities can understand what 9-1-1 is for and that it's not something that you just call for um you know for any reason and some individuals cannot conceptualize what that means right and so it can be taught in school but you know if i'm just going
17:30 - 18:00 to give an example if you're you eat peanut butter every day and today there's no peanut butter at school that might be a crisis to a child a real crisis but that's not a 9-1-1 call right and so we have to be careful about how we teach and who we teach and so this tool right here this resource that's available online uh absolutely talks about what an emergency is provides a little script for the person um say my name is and i here it is and i have autism it could be
18:00 - 18:30 any disability there so giving that script knowing practicing this is really great they tell you what you should do who you're speaking with that you know and all and what to do if that emergency would happen you know this is all great and i think is important to teach but you also have to remember that a person in that crisis may and all of us may act very different and we're talking with kids maybe who have anxiety or other things let's practice this let's reinforce it but remember it may not always turn out
18:30 - 19:00 you know as expected but we really should prepare and plan as much as possible so this is kind of really quick what's that little script is like um and feel free based on your own home or apartment do adjust that any way that you would like so i talked to quickly about developing a safety plan so through our grant we are working on helping you in a very easy way create that safety plan so either by drawing or taking pictures and helping hopefully with your
19:00 - 19:30 child but definitely preparing and practicing a safety plan um for exiting the house important that there's not just one way out there should be two ways out of every aspect there's um things that we're developing on um fire alarms and and recognizing them and what to do so all of these things are part of the resources that we'll be providing but definitely you can start here um and working on a safety plan and if it's not our resources please feel free to google them and and even like i
19:30 - 20:00 said sesame um sesame street resource really had a great one as well so i think i've saved this a couple times in this presentation but if not i'm going to say it really loud and clear here please don't use a police officer as punishment so don't say if you do this one more time i'm going to call the police and we heard hear this and we see this and believe me i check it and i know our police officers check it as well because we would like we really need to make sure that our police
20:00 - 20:30 our police force our law enforcement and other emergency responders are considered safe that we when they need something if they're lost if they need something they're going to go to them so please please please do not use police officers as that punishment okay now we're on transportation and travel safety does this look like your car [Laughter] lots of things here can happen on this one here i'm going to say let's just
20:30 - 21:00 talk about autism for a second you know we can have somebody opening and closing the door handle or the locks up and down the seat belts taking it off putting it on um you know stimming on something so lots of things can happen here really really challenging so and this could also i'm this is personal vehicles and i think a little bit i talk about the school bus transportation but this these are issues driving on a road is you know we really need to be safe so getting help from
21:00 - 21:30 a behaviorist or from your medical care provider your healthcare provider or someone else if this is really an issue please do that there are there is assistance that's available whether that be a special car seat or a behavioral approach or whatever that might be we really need to make sure when you go somewhere that you are safe and that other people who are around you are safe as well really quickly i was on the road when somebody i knew this person is a person with autism or route 22 springfield gets out of the car on
21:30 - 22:00 new 22 cars coming in my breath i was like i was like i can't get out of the car what are we doing and it did wind up being safe but these are the things that can happen we really need to prevent them so there's such thing i'm not sure if you've ever heard of a certified child passenger safety technicians and there's the link right there it's done through safe kids and state farm and knits of the national highway traffic safety administration association oh i'll get that right um but there are cpst's that are specifically trained
22:00 - 22:30 for individual transportation of individuals with disabilities and that could be medical that could be like with your their back or a trach or whatever their transporting transporting or it could be for behavior um yeah behavioral um instances where that person is unbuckling the seat belt and what are adaptive ways to get in and use the car so get make friends with that certified child passenger safety technician these are the same people who get that car
22:30 - 23:00 seat into the car really well this is they have people who are special especially trained with special needs and if you click on that link and go to pick a technician find a tech you'll see the ones there's actually a tab or a little a drop down for those who have that specialized training i'm going to then say don't be that person because unless you're trained we all come up with these adaptive ways to things to put on our carter to make them more comfortable or to keep them from um
23:00 - 23:30 exiting the car and we come up with these really creative mom and dad ways to do that but these things are not regulated and we do not if you have an accident or you need to get out of the car quickly this may prevent this and they're not they have not been tested by the manufacturer in your car so there's lots you can get them on all different online you can go and google them and find these things but i don't recommend them because they really have not been tested um work with your healthcare provider work with these cpsts and really make sure what you're
23:30 - 24:00 doing really will protect your child um in any way um i really want to emphasize um i love creativity but not here okay um we do have what you know we call as social stories what everybody kind of knows as social stories but we call them pictural narratives we have developed some in very in all different topics here's one that we have online for wearing your safe seat belts so or safety belts so this is really helping the child understand when to put it on
24:00 - 24:30 how to put it on you can see different colors here you know because not all seatbelts look the same we want to make sure they understand that whatever theirs look like in their in their car they need to use it so this is just one um social story or pictorial narrative personal narrative that we have um so now let's flip over from card to air and go over this really quick there is what's called a personal support specialist um or tsa that's a traffic
24:30 - 25:00 the transportation security administration that's when we go in through the airport and we get to that security um place where we have to give our passports and stuff there are people who are trained or help support you if you have a disability this is anyone any person with disability child adults anyone they're there highlight this call 20 call 72 hours in advance let them know ahead of time whether there's going to be medication
25:00 - 25:30 there's a wheelchair there's a whatever it is let them know so they're prepared you will get to that airport there's a card i'm going to show you that little website there on the bottom will help you through this but you let them know someone will be there to meet and greet you help you through that airport through tsa you're good and then once you get to the actual section where you wait for your plane then it transfers from tsa to the airline so i would call the airline tube because they are hooked to the the the um the flight attendants let them know
25:30 - 26:00 what's going on they'll help transfer if there's a wheelchair involved but um really make sure the tsa contact you let them know as soon as possible there's that little card that they you can print out um and provide to them and then they and if you call 72 hours in advance that's going to come up when they they they see your name on at tsa and and if they don't you could ask for a supervisor they will not separate you from your child they'll make sure you're together and this will be an extra care during that whole process
26:00 - 26:30 okay and back to this for a second just if they cannot deny you flight unless there's an impending risk when you go on that fight so if they feel this child with autism is going to cause trouble on that fight to themselves to other passengers to the flight attendants or the flight itself they can deny that plate but they have to provide you as to why um you can ask for a supervisor there have been really tragic instances where
26:30 - 27:00 families have been on there and that child just wanted a special meal and they did not get that meal and that they landed the plane and um yeah and they would not let them get back and they were caught in another state and couldn't get back right so really the more you could communicate the more you can let them know what the needs are the better it is for you if and when you want to play we all want to fly and right now it all changes with covid but um really um important to know okay community safety eloping and wandering
27:00 - 27:30 another pictorial little social storybook that we have developed here about walking through town pedestrian safety that's another of some more work that we're doing um with our grant we're doing more on that we have available to print um and you can even make one yourself depending on this one's for autism but you can kind of go on there make i you can use those business cards you can buy in the in the printer store and instead of using those business cards make ids right and you can tear them apart laminate them do
27:30 - 28:00 whatever you want but um it's important to have them and i'll tell you about a story in one second but the decision to use them whether you're an adolescent an adult is always your choice right you do not have to disclose your disability even though i will make that recommendation that it is better to provide that information to prevent something from going bad than to not so i'm an advocate for the use of id cards but it is a personal choice and you do
28:00 - 28:30 not have to disclose a disability um i'm going to talk use autism for a second it could be any disability but let's just say this person is an adolescent he doesn't have very good personal hygiene he's wearing a hoodie he's not walking really welcoming any disability and this officer is thinking you know this person might be intoxicated might be on drugs whatever it is and hey where are you going and this person was taught to get his id within a police officer so
28:30 - 29:00 he now goes into his inside his uh forget it's in the pocket let's just say he's going in where he has his um id and now what does that officer think he's going for we're going for a weapon right and so this is an emergent situation right now it's a flight or flight for fight or flight for the um police officer so we need to teach to the id may i get my id out of my pocket or my son has one on a retractable keychain that is outside of his clothing right so we really need to
29:00 - 29:30 pay attention to yes providing these ids but how we present them and what we say if we're able to say and if the person has a communication device that's really great because you can press my name is or i live so you can you use those communication devices for that so there's where i say how it's presented we can have the ids any way we possibly could be on um you know on a wrist on an ankle and wherever we wear it but pay attention to how we present it because we don't want that to be
29:30 - 30:00 misinterpreted um these you'll see you know we see blind child deaf child and we do see these autistic child so um whatever sign you use um i really want to emphasize if you you have the right to do it and i after this presentation if you'd like some information how to get that in your town i can give you some tips but i want to emphasize that this sign in front of your house it's actually not actually inside of your house it's on two sides of the road a little bit past your home
30:00 - 30:30 on both sides of the street but it just having that sign does not mean that the drivers understand what it means what what does autistic child mean what does that mean to safety what does it have to do with my driving so don't i don't want to give you the false um impression that that sign is going to help with traffic and um and pedestrian safety there it may help um i i've communicated this via um a letter to the editor i i said when my
30:30 - 31:00 sign went up i i did that letter to the editor and i explained to the community why i was doing that talk to your local municipality let them know what's going on have the conversation with your law enforcement police fire rescue rate and have talked about that because the sign just isn't enough um this parking accessible parking um can my child with um a developmental intellectual disability with autism can we get that for them and the answer is
31:00 - 31:30 probably yes um it depends on it depends on the child i'm not going to say for sure so it really has to do with physical um you know whether the person can walk safely from the parking lot to where parking space to the entrance of where they're going it could be heart conditions physical um uh conditions it can be multiple things but if it is unsafe for your child or the person to go that distance this kind of accessible parking is likely available so it needs a
31:30 - 32:00 prescription from the doctor there's a whole process and those links to apply are right there at the bottom of this slide um so don't assume it can be done but i will tell you that the new jersey um motor vehicle commission is aware of the safety dangers related to autism and other things so it is in consideration but again it needs to be a safety issue and it does need to be accompanied by um information from your
32:00 - 32:30 the child's physician as our kids get up um in age and we're talking about adolescence to adults remember the transition plan in school let's teach them some things that they may need when they go into our real world right atm safety what to do and we again are providing i say again but we are making resources to help with the safety here but also things like um getting uh refilling a prescription uh using uber or lyft or one of those
32:30 - 33:00 other transportation things so don't think all safety um you know quick fire safety and um home safety let's really empower um those individuals who are want in need to live a full and meaningful life real safety tips things that we often learn as a matter of course but sometimes we need to teach them to kids with disabilities adolescence adults so that they are safe too we want to make sure
33:00 - 33:30 everyone is safe together um elopement and wondering significant issue for kids with autism adults with alzheimer's people with dementia issues some people who are experienced suicidal thoughts and want to elope and get away so these are really some significant things that we really need to pay attention to so many organizations the government everywhere all of this country are
33:30 - 34:00 really focused on this issue because it's so significant so recommendations are here securing windows doors using alarms visual signs i'm not going to go through each one of these for time but there are many ways you can do this there are organizations that can help you you want to talk to your healthcare providers so many things are available to you but please please talk to someone don't assume they won't um and the when we talk to um the statewide it's actually the nation one of the nation's leading
34:00 - 34:30 subject matter experts on this topic it's about acting quick if your child or adolescent adult is out and they have a special health care need autism or other it is imperative to act quick and contact to the people that you need to and communicate as much as you can to them critical the time is of the essence that's the biggest emphasis that i have on that um personal tracking devices we hear of those we all have them for our cars or on our phones but there are some
34:30 - 35:00 that are available for um individuals with um autism alzheimer's all people that have the tendency to wander they range in price they have annual charges and contracts and all these things are going on and not everybody can afford that right and so there's also different types of technology some are gps some are cellular some are radio signals so people ask me what's the best one and there really isn't because it depends on where you live what your child's challenges are all of
35:00 - 35:30 these things will they keep the device on them will they not how secure is it on them when they wear that so there's lots of them here they can be in the pocket on the wrist on a lanyard all different ways to wear them so lots to consider everything is individualized we created this resource here that kind of gives some general guidelines to buying them or or evaluating them i should say we have some of the popular ones there on the right but um you'll hear a project lifesaver is one
35:30 - 36:00 that is very often um recommended it is endorsed by every um county in our state but there's pros and cons to all of them um so there i'm not going to recommend one or the other but please realize that there's a lot to consider when evaluating a personal tracking device and to go to your local organizations your local municipality um your law enforcement the sheriff's department is for project lifesaver to tell them what your needs
36:00 - 36:30 are and hopefully someone would be able to help you there is a medical diagnosis z9 1.83 so what's that for right but that's a doctor your doctor could put could actually give that diagnosis that your child with autism has this tendency to wonder so they're going to have the diagnosis of autism and the tendency to wander and then perhaps you might be able to submit this to your insurance you can try you know in my experience i
36:30 - 37:00 don't know of one insurance company that has um has then covered that but that denial is also very important because with that denial you can then try either to perform care or to your local um fire department or whatever and saying hey we really need this for safety my the insurance company denied this how else can i get funded right so um the process is important you can try you may get be covered and that would really be great i've noted here that it's really would
37:00 - 37:30 be helpful just like we have a safety plan for fire let's have a fire family wandering emergency plan as well and you can talk to your child's pediatrician healthcare provider other therapists emergency responders to help make that plan um here i just i said i briefed here just quickly about project lifesaver there are pros and cons but this is pretty much um available in every new jersey county through the sheriff's department drowning is the leading cause of injury
37:30 - 38:00 related death for people with autism many people particularly with wandering a little mint will wind will be attracted know how to swim they may not understand the water temperature how deep the water is the danger that's involved you know from falling or jump jumping so really important to know um particularly if your child loves water but i cannot emphasize enough to teach um
38:00 - 38:30 your child to swim and or depending on their child's capacity and understanding water water safety education i know children's specialized hospital officer offers that many organizations throughout new jersey do offer water safety education and safety prevention you know preventive measures for safety are in and around the water again to build those relationships with local emergency responders and let them know your concerns about water safety teach your children about water and be
38:30 - 39:00 safe and always protect water sources around you all right emergency preparedness emergencies can happen anywhere anytime we don't know it could be the lightning that just kind of i thought hit near my house just the other day or it could be you know like i said a fire it could be we're talking about covet here we could mass disaster it could be anything and we don't necessarily expect emergencies so everyone all of us
39:00 - 39:30 whether we have a person with a disability or not we all need to be as prepared as possible and prepare that any kind of plan before the emergency happens so here again i recommend to contact or discuss with your local emergency responders some of your needs that you have a local fire department to help with you know if your child does not respond to the uh to the um smoke alarm or fire alarm then what alternates all what are some alternates to help them do that if their your
39:30 - 40:00 child's bedroom is on the second floor and they have a physical disability what do we do if you live in an apartment what do you do so let's prepare and plan before um an emergency happens um here's uh this is on a resource you know cue there it's a safety plan so it's really again describing what to do talking to family and friends getting your supports in place before the emergency happened so this you know we always always kind of say tomorrow's another day but really we don't know when it's going to happen and
40:00 - 40:30 i really and highly recommend one day make it a fun day you know let's do a safety plan together and figure this out and actually it could be much it could be fun in the planning but it's also probably an aha moment that it's probably more comprehensive than you ever thought it was because we're talking about maybe medicines and medical information medical supplies wheelchairs if you have a um motorized wheelchair that battery and what if that battery dies and there's no power like there's just so
40:30 - 41:00 many things my son um we um he is not toilet trained and we have diapers and he soils through clothes and we talk about then if the power went out i have nowhere to wait to wash all of this very horribly smelling infested stuff and then what about the sanitary aspect of that or he has a communication device or other ways that he keeps himself occupied who's how does that get in charge so for a typical person hey i don't have my tv but
41:00 - 41:30 when we're talking somebody who this is their routine and this is all they know these can be very significant things so how are we preparing and charging things and getting things ready for the emergency and here like i said the devices the medicines the communication devices all of those things i just mentioned register ready i'm going to be the big cheer flag um for i recommend everyone here register and that's ready um there's the phone number there is the
41:30 - 42:00 website it's free it's voluntary it it is where you can provide all this information to a confidential group register ready part of the new jersey dot gov it is totally um confidential and it's only used for emergencies but this is where you say i have medicine that needs refrigeration we have a trait we have a wheelchair that needs batteries i need assistance getting dressed my child doesn't cannot eat on his own all of these things language barriers it could be anything
42:00 - 42:30 um would go into this we have to update it you have to review and update it each year but when there was superstorm sandy uh for those who went through that or any other disaster this this is where your local regional group looks and says what do we need here we need rams for wheelchairs we need refrigeration devices we need a quiet space for this you know this group of people who have autism really i cannot emphasize enough this is really one of the best things you could do
42:30 - 43:00 before an emergency to get onto this list here's some more you can refer back to this but here are some other emergency preparedness websites that may provide you with some additional information all right police interactions law enforcement and criminal justice so this can happen anywhere you think you know just when we're pulled over in a car but when we access government buildings when we go to the airport at community events when we go to a concert they have to give up that bag and they have to
43:00 - 43:30 inspect that right think about a child with autism who really loves this favorite bear or this this bag and now have to give that up and what that might what might happen there so let's prepare for that right these are things and how do we interact how do we plan for and practice a lot of these types of security checkpoints that might happen with our kids um and these are just some things i listed here that they could be misinterpreted right or maybe challenging so waiting in lines can be
43:30 - 44:00 hard for some people those questionings that are asked how do they respond to that and they they may ask you know have you ever been here yes um and they can ask questions yes yes yes and so they may be saying yes to the wrong question right so these are things that we really should prepare for and help practice whether that be at home and or at school through the iep and through some safety goals that you um implement within those safety plans here in new jersey we have something called the criminal justice advocacy
44:00 - 44:30 program these are for people with disabilities who um have there's it's to prevent obviously things that from you know them getting involved in criminal justice um issues or this could be um if they have um somehow gotten into a situation but maybe they didn't understand what they did right so this is something they've done but they did not even know they were doing wrong they may have gone from one theater to another and not paid to
44:30 - 45:00 go from one movie to another it could be anything right so this wonderful program here it really provides a lot of helpful information advocacy you know support um the website is there at the bottom of that page and school safety we talk about safety drills so we all know those fire drills we talked about now there's you know the lockdown drills all these different alarms and drills that happen in the school but now put that into perspective of our children with various um special health care
45:00 - 45:30 needs so kids with anxiety who may now act differently and during a drill a person with autism who now you're asking a lockdown drill to stay in a place that's dark and and quiet and how do we do that so these are all important things that you need to consider and have that conversation with your school the school should have and they don't necessarily have to disclose what that plan is but they should have a safety plan that's inclusive of students with
45:30 - 46:00 special needs right that should be part of their program do they have to explain that detail to you no but what should you should do is talk about your iep and what is specifically for your child if he's on the second floor and you're in a wheelchair what are you doing if he's in a lockdown drill what are we doing you can have those discussions particularly related to your child's iep and how they can support your child to be safer in these because we can't forget that we said
46:00 - 46:30 okay well we've got this right but how do you have that right and you have the right to be able to put that in place that they are securely and safely um being handled during emergency situations um training but school bus transportation there is a lot new jersey that requires um bus drivers and aides to be trained um you can find that training online you can see it it's there and available i gave you that link below there i'm really very helpful
46:30 - 47:00 um but they are required um but they may not know anything about your child in particular so i gave you these are all just all the different types of the information and the training that's available for them just so that you're aware of what they are but there's also this sheet that you can print from that page which gives you you have the right to provide that bus driver and aid with whatever information you think um they need to know so it you know my son actually back when he was on the bus
47:00 - 47:30 this kid loved to take his lunch box and he would climb overseas just to grab that lunch box and so what were they doing there on the bus and one day they hit it and that kid climbed to the driver and now i tell me how that didn't affect the safety of those kids so these are conversations important conversations to have you can talk to your your transportation um at the school that you know your transportation group that arranges for the transportation as well to this as a school bus driver and aid themselves
47:30 - 48:00 and treat them nicely we always treat them nicely so these are some tips for improving student school bus experience and all the links are there below these are areas of consideration that you can put within your iep so does your child need an attendant or aid is there a certain bus schedule what about field trips are they you know a special bus for those field trips does your child have seizures or allergies and how are they handling that at the bus during that bus ride do they need a
48:00 - 48:30 nurse a particular nurse on that ride with them all of those types of things could be discussed and implemented as part of the iep and if it's not part of the iep it doesn't have to happen so put it in that ip it's a legal contract to make sure if it's something significant to you the safety of your child put it in if they don't i don't know what that issue might be if they don't there is a section of the iep for parental um i don't know what it's called the
48:30 - 49:00 just for parental comments or whatever you can say i would like to put this into the parental concern area and then you put that in there so it's clearly still in the iep um and lastly um some safety education tips right so how do we teach safety right and we want to make sure it's taught in an understandable way that's clear and simple enough um very often we hear from our older disability advocates that it was always taught to the aid or to the teacher or to the parent but never
49:00 - 49:30 directly to them we want to empower our kids as best they can to be as safe and increase that as they you know become independent adults so let's teach directly to them let's teach them in very appropriate ways um find out what the barriers what is a communication what what is it the way do they need to use pictures to understand or is it words is it best if we practice so there's just different ways that we can teach safety so here are some here ways that we can teach safety education
49:30 - 50:00 really really we can teach anything but important to adopt this based on your child's needs and learning style and some for the iep here's just some things that i think are some core safety things for i mean obviously they can get like i said using a uh the atm and all that we can get very much deeper into fire safety skills and pedestrian skills bike skills all of those things but here's some core core
50:00 - 50:30 safety skills that i think we want to make sure our kids understand and know and tada how much time do we have do they do it we have like 10 minutes wow is all i can say adrian let me tell you something i am so um grateful for how organized and how thorough you have been with putting this information together not only the presentation that you've just given but
50:30 - 51:00 i know there's a lot of links and printable things and resources to go to i really can't thank you enough for um how comprehensive like when we we talked safety i i don't think i went through all of the different um areas so thoroughly so i really hats off to you thank you and it's personal right so as much as i presented this is different for every single person that's on this call and every child right or adolescent adults so you need to take this and personalize it to make sure
51:00 - 51:30 it's what reflects you um and and talk to your healthcare providers talk to your emergency responders really it's it's very much individualized for every person you know what it is individualized but i want to underscore in case uh and not everybody's hearing it but i'm sure they were i mean you just have a very reoccurring theme of number one plan ahead right just plan ahead empower yourself empower your youth and think ahead as much as you can and also just communication seems so key
51:30 - 52:00 um and that i love the suggestions of reaching out to the emergency responders as far as helping them understand what's going on in your home and with your youth and also helping the youth understand what might happen when someone shows up in a uniform or when someone when they need help who to go to i mean you just can't say enough about the importance of that laying the groundwork right and i know you can't guarantee that behaviors doing
52:00 - 52:30 a will result in b c and d but you have nothing to lose in trying right and hopefully like you said when the team knows um i just i i really value that point that you said over and over again even in the emergency plan leaving a house because of fire right like i think even who's your team like you said when you got into loper your neighbors it helps if your neighbors know if they see something that looks like it might be of concern that they know you're okay with them calling you and
52:30 - 53:00 saying oh i just saw josh i went down the street are you aware right i mean and many um i and i don't know the details of the one for every community is different and depends rural urban you know depends on where you live but many police or emergency dispatch systems have a um so let's just say my my mother was on oxygen i could communicate to them and that would be on the system in my local
53:00 - 53:30 municipality though so if they would know if there was an emergency or bipolar if the power went out they know they have to get to that person because that's they're relying on that oxygen right so the same thing can go through with um wandering allotment whatever there is a many times a database that's on within your local emergency responders that hold some of this information the critical information that can help them in emergent situations so communicate with them they're really um
53:30 - 54:00 they would want to know they're they want to protect and to serve and i i i think we know too that as you were saying every municipality is different you know we've got especially in new jersey there's such a range of whether it's urban suburban rural whatever it might be but in my experience um you know we've been involved with uh some webinars with um helping law enforcement communicate with families and youth just about miscommunications right about one side not understanding what the other is dealing with and vice versa and i just
54:00 - 54:30 think there's so much to be gained by asking a question starting a conversation and um really just trying to uh connect and communicate so um i heard that loud and clear on a couple of different topics and like i said i think it's really so valuable and i'm going to remind everyone that um we are recording this we are going to be sharing this and um as well as the slides because um adrian did a fabulous job of covering a lot of topics um giving a great overview but
54:30 - 55:00 there's so much more information on each side if there's a topic if there's something that you want to follow up on i urge you to go back to the slide when you receive it and we will make sure that um we have websites and links that adrian embedded so that all you'll need to do is click to follow up and or print something um and i don't see any questions in the channel i'm going to ask one more time if anybody has a question please feel free um to offer it up but adrian um i will be sharing your contact information please please do because
55:00 - 55:30 many people have asked me you know all right you talked about this but now you know you know what about this or whatever if i don't know you know again i don't know your personal you know your the diagnosis or what the the personal environment might look like or the challenges but i could at least point you in the right direction or give you the recommendations that could at least help you um in whatever way so i i'm they call me resource central i'm kind of the safety girl over at children so um feel free to give me a call at least
55:30 - 56:00 i can help connect you or hopefully provide you with whatever information or resources you need well thank you resource girl we're very happy to have you with us today and um i am just going to uh say that i also appreciate like with the challenge youth that's who we focus on but a lot of this information is also helpful as you said if there's an elderly um dementia patient whatever it might be a lot of these um tips are very applicable to other areas so adrian thank you thank you for taking time with
56:00 - 56:30 us today but for also um putting together this information that we will be sharing i love to share um and i know we have a lot of families that will be uh checking you out later on our youtube so thank you for being with us adrienne who is with the children's specialized hospital thank you so much and calls cares we're going to give a shout out to them let me tell you something what wonderful things that uh fundraising that they are doing is presenting it's very needed and i think
56:30 - 57:00 um you know i'm a glasses half full kind of girl we hear a lot of uh obviously things that we're concerned about going on in our media and on our world but to hear that um an organization like kohl's is supporting something as important as this education and planning and strategy and cooperation and we all know it takes a village but um i really think this is an example of what what needs to happen more in our world so thank you thank you to you and everybody we hope to see you next week have a good one everybody stay healthy bye